Disability Makes Me Angry

A friend of mine wrote an article that touched on the subject of identifying as disabled. I read it at an interesting time that fell on the heels of getting really pissed off at my body for living with this crappy disease.

Disabled?

Yes, I have a parking placard that affords me the benefit of parking in space that may be closer to my destination (sometimes those spaces are not any closer to the door). My neurologist suggested this at a time that I was falling off curbs, unable to walk far distances, and basically, a danger to myself if I were to slip on puddles, ice, or nothing at all.

Yes, I am unable to work a ‘normal’ 40-hour per week job. There’s no way I could get myself up and out of the house, every day and ‘be on’ for an extended period of time. My brain and body just couldn’t keep up. But since I was self-employed before MS and I continue to be self-employed, I do not receive disability payments from a former employer or the government. I just try to continue to work how I can, earn what I can pay what I must, to continue to take care of myself.

And yes, I am able to ride my bike for miles at a time. I’ve worked hard to build up the strength and endurance to do so. I’ve overcome fear and doubt to push myself beyond what I thought possible. But even cycling doesn’t erase my disability.

Falling down

After having an accident on my bike last month, I had to take some time off from cycling. I only took off three weeks. It may not seem like a long time, but gosh darn it if I didn’t get totally wiped out and fatigued way too soon. This made me angry, then sad. I didn’t like the feeling of weakness in my legs at all. It really pissed me off.

Give yourself a break

Then I had to give myself credit for having just recently completed another round of Rituxan infusions. Come on, Lisa, I said to myself. You just got pumped up with an agent that actively looks for specific cells in your immune system to destroy. You know that you typically feel wiped out for a few days. Give yourself a break.

Keeping up

Just yesterday, my husband and I were doing some yard work. We have a metal fence that provides the perfect support for an ornery system of wild grapes. I was cutting the grape vines off of the fence and pulling its tentacles out off nearby trees and bushes. At times, I was able to pull some of the root systems out of the ground too. It’s dirty work but someone has to do it.

Trying to finish what I start

The longer I was outside, I more fatigued I became. The longer I was outside, the later in the morning it became and the temperatures rose. I reached a point that I was so tired that my husband suggested that I stop, go inside to cool off, drink some water, get cleaned up, and not come back outside to work. That pissed me off. Again I hate feeling weak and unable to complete the job. I hate having less ability to do the things that would have been easy before MS.

The struggle with limitations

I struggle with what these limitations mean. Having less ability gets awfully close to resembling a disability.

Even as a musician, I experience disability. Considering all that multiple sclerosis and rheumatoid arthritis have done to my hands, particularly my left hand, I am not able to play what I once could. Some pieces which used to be my go-tos for high-intensity power and emotional expression are simply too exhausting for the arms and hands. Pieces that require quick and precise left-hand movements become sloppy or sluggish.

The term disability is like a loaded gun that is cocked and ready to be released at an inopportune moment. We should not throw it around lightly. And what it means for each of us is unique. I might prefer to say that I have limitations, but that doesn’t erase the fact that disability will always be part of my life.

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Comments

Lisa, What a great way of explaining “disability”. I thought no one understood. I like others am finding understand what a theif MS is. For me it has stolen my health, career, insurance, money, mostly my faith, and on occasion my self esteem.

It is so frustrating to not be able to do as much as I used to. I still try so hard. In fact I dawn knee pads and gloves to crawl in my rock landscaping 1/4 acre lot pulling weeds out front. For my 900 sq ft lawn my family felt sorry for me after 18 yrs giving me a riding mower.

I push myself to exhaustion each and every day; laundry, cooking, cleaning, landscaping…I will continue to do so until I can’t anymore.

Great article. Sounds like me. I to get so frustrated with the limitations this disease puts on me & do I get cross!!!! I invested in a fit bit and have used it as my personal trainer and can I say aiming for 10 I steps & trying to get 30 min of active excercise in I have improved. Fortunately I love gardening so I can reach up both in it and feel so much better for it. I want to keep going but I can’t and if I do I know I’ll suffer, fine line……
I’m on disability now my processing new info is a issues with work. I have found the last few years this disease is robbing me of my confidence going out or away which really makes me cross and sad. I’m in the “thinking”, about doing strength training for I have noticed my strength is going , I still get the job done. I will win:) enjoy the day!

OMG! you nailed it! i just posted something on FB the other day. The hardest thing i have ever had to do is accept my own limitations. I get mad too. then i get irate. i cant work any more. i was in the automotive field. i was working on cars and replacing tires. i did everything from simple oil changes and flat rep[airs to installing new tires on dually trucks and replacing transmissions. any given day you would find my with my head stuck under the hood of a car or under the the back end of a truck. now? i sit in front of my computer and attempt to complete surveys for a few dollars at a time when i can comprehend what they are asking me. and yes, IT PISSES ME OFF! thank you for this article